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Biobanks for Biomedical Research: Evolution and Future

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Handbook of Bioethical Decisions. Volume I

Part of the book series: Collaborative Bioethics ((CB,volume 2))

Abstract

For more than two decades, in the era of post-genomics and personalized precision medicine, biobanks for biomedical research have successfully fostered the development of basic and translational biomedical research. The expansion of biobanking has brought a wide and intense debate on ethical, legal and social implications (ELSI) when using large numbers of human biological samples and associated personal data. All these challenges are relatyed to the fact that these infrastructures allow several future research projects to be carried out along general lines of research, with the use of samples and sensitive information, such as genetic data, which can be shared internationally, and whose specific purpose the donor cannot know at the time of donation. In this chapter, I will address the challenges that have emerged at the different stages of the evolution of biobanks, from biobanks’ governance stage to the sustainability stage, through the harmonization and collaboration networks stage, in order to address the challenges biobanks will deal with in the near future.

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References

  • Akyüz, K., Chassang, G., Goisauf, M., Kozera, Ł., Mezinska, S., Tzortzatou, O., & Mayrhofer, M. T. (2021). Biobanking and risk assessment: A comprehensive typology of risks for an adaptive risk governance. Life Sciences, Society and Policy, 17(1), 10.

    Article  Google Scholar 

  • Appelbaum, P. S., Parens, E., Waldman, C. R., Klitzman, R., Fyer, A., Martinez, J., Price, W. N., 2nd, & Chung, W. K. (2014). Models of consent to return of incidental findings in genomic research. The Hastings Center Report, 44(4), 22–32.

    Article  Google Scholar 

  • Árnason, V. (2004). Coding and consent: Moral challenges of the database project in Iceland. Bioethics, 18, 27–49.

    Article  Google Scholar 

  • Beier, K., & Lenk, C. (2015). Biobanking strategies and regulatory approaches in the EU: Recent perspectives. Journal of Biorepository Science for Applied Medicine, 3(1), 69–81.

    Article  Google Scholar 

  • Bjugn, R., & Casati, B. (2012). Stakeholder analysis: A useful tool for biobank planning. Biopreservation and Biobanking, 10(3), 239–244.

    Article  Google Scholar 

  • Black, L., Avard, D., Zawati, M. H., Knoppers, B. M., Hébert, J., Sauvageau, G., & Leucegene Project. (2013). Funding considerations for the disclosure of incidental genetic findings in biobank research. Clinical Genetics, 84(5), 397–406.

    Article  Google Scholar 

  • Bledsoe, M. J. (2017). Ethical legal and social issues of biobanking: Past, present, and future. Biopreservation and Biobanking, 15(2), 142–147.

    Article  Google Scholar 

  • Budin-Ljøsne, I., Teare, H. J. A., Kaye, J., Beck, S., Beate Bentzen, H., Caenazzo, L., Collet, C., D’Abramo, F., Felzmann, H., Finlay, T., Kassim Javaid, M., Jones, E., Katić, V., Simpson, A., & Mascalzoni, D. (2017). Dynamic consent: A potential solution to some of the challenges of modern biomedical research. BMC Medical Ethics, 18, 4.

    Google Scholar 

  • Cadigan, R. J., Edwards, T. P., Lassiter, D., Davis, A. M., & Henderson, G. E. (2017). “Forward-thinking” in US biobanking. Genetic Testing and Molecular Biomarkers, 21(3), 148–154.

    Article  Google Scholar 

  • Caenazzo, L., & Tozzo, P. (2020). The future of biobanking: What is next? Biotechnology, 9(4), 23.

    Article  Google Scholar 

  • Cambon-Thomsen, A., Rial-Sebbag, E., & Knoppers, B. M. (2007). Trends in ethical and legal frameworks for the use of human biobanks. The European Respiratory Journal, 30, 373–382.

    Article  Google Scholar 

  • Caulfield, T. (2007). Biobanks and blanket consent: The proper place of the public good and public perception rationales. Kings Law Journal, 18, 209–226.

    Google Scholar 

  • Caulfield, T., & Kaye, J. (2009). Broad consent in biobanking: Reflections on seemingly insurmountable dilemmas. Medical Law International, 10(2), 85–101.

    Google Scholar 

  • Caulfield, T., Burningham, S., Joly, Y., Master, Z., Shabani, M., Borry, P., Becker, A., Burgess, M., Calder, K., Critchley, C., Edwards, K., Fullerton, S. M., Gottweis, H., Hyde-Lay, R., Illes, J., Isasi, R., Kato, K., Kaye, J., Knoppers, B., Lynch, J., et al. (2014). A review of the key issues associated with the commercialization of biobanks. Journal of Law and the Biosciences, 1(1), 94–110.

    Article  Google Scholar 

  • Chadwick, R., & Berg, K. (2001). Solidarity and equity: New ethical frameworks for genetic databases. Nature Reviews. Genetics, 2, 318–321.

    Article  Google Scholar 

  • Chadwick, R., & Cutter, M. (2007). The impact of biobanks on ethical frameworks. In M. Häyry, R. Chadwick, V. Árnason, & G. Árnason (Eds.), The ethics and governance of human genetic databases (pp. 219–226). Cambridge University Press.

    Chapter  Google Scholar 

  • Chalmers, D. (2015). Biobanking and privacy laws in Australia. The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics, 43(4), 703–713.

    Article  Google Scholar 

  • Chalmers, D., Nicol, D., Kaye, J., Bell, J., Campbell, A., Ho, C., Kato, K., Minari, J., Ho, C-H., Mitchell, C., Molnár-Gábor, F., Otlowski, M., Thiel, D., Fullerton, S., & Whitton, T. (2016). Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era. BMC Medical Ethics, 17, 39.

    Google Scholar 

  • Clayton, E. W. (2008). Incidental findings in genetics research using archived DNA. The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics, 36(2), 286–212.

    Article  Google Scholar 

  • Clayton, E. W., Haga, S., Kuszler, P., Bane, E., Shutske, K., & Burke, W. (2013). Managing incidental genomic findings: Legal obligations of clinicians. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 15(8), 624–629.

    Article  Google Scholar 

  • Coppola, L., Cianflone, A., Grimaldi, A. M., Incoronato, M., Bevilacqua, P., Messina, F., Baselice, S., Soricelli, A., Mirabelli, P., & Salvatore, M. (2019). Biobanking in health care: Evolution and future directions. Journal of Translational Medicine, 17(1), 172.

    Article  Google Scholar 

  • De Clercq, E., Kaye, J., Wolf, S. M., Koenig, B. A., & Elger, B. S. (2017). Returning results in biobank research: Global trends and solutions. Genetic Testing and Molecular Biomarkers, 21(3), 128–131.

    Article  Google Scholar 

  • De Souza, Y. G., & Greenspan, J. S. (2013). Biobanking past, present and future: Responsibilities and benefits. AIDS (London, England), 27(3), 303–312.

    Article  Google Scholar 

  • Devereux, L., Watson, P. H., Mes-Masson, A. M., Luna-Crespo, F., Thomas, G., Pitman, H., Speirs, V., Hall, A. G., Bollinger, N., Posada, M., Lochmüller, H., Thorne, H., Eng, C. B., Riegman, P., Ng, W., & Parry-Jones, A. (2019). A review of international biobanks and networks: Success factors and key benchmarks-a 10-year retrospective review. Biopreservation and Biobanking, 17(6), 512–519.

    Article  Google Scholar 

  • Doucet, M., Yuille, M., Georghiou, L., & Dagher, G. (2017). Biobank sustainability: Current status and future prospects. Journal of Biorepository Science for Applied Medicine., 5, 17. https://doi.org/10.2147/BSAM.S100899

    Article  Google Scholar 

  • Eriksson, S., & Helgesson, G. (2005). Potential harms, anonymization, and the right to withdraw consent to biobank research. European Journal of Human Genetics, 13, 1071–1076.

    Article  Google Scholar 

  • European Commission, Directorate-General for Research and Innovation. (2012). Biobanks for Europe: a challenge for governance, Publications Office, https://data.europa.eu/doi/10.2777/68942

  • Giesbertz, N. A. A., Bredenoord, A. L., & van Delden, J. J. M. (2012). Inclusion of residual tissue in biobanks: Opt-in or opt-out? PLoS Biology, 10(8), e1001373.

    Article  Google Scholar 

  • Gille, F., Vayena, E., & Blasimme, A. (2020). Future-proofing biobanks’ governance. European Journal of Human Genetics: EJHG, 28(8), 989–996.

    Article  Google Scholar 

  • Grady, C., Eckstein, L., Berkman, B., Brock, D., Cook-Deegan, R., Fullerton, S., Greely, H., Hansson, M., Hull, S., Kim, S., Lo, B., Pentz, R., Rodriguez, L., Weil, C., Wilfond, B., & Wendler, D. (2015). Broad consent for research with biological samples: Workshop conclusions. The American Journal of Bioethics, 15(9), 34–42.

    Article  Google Scholar 

  • Greely, H. T. (2007). The uneasy ethical and legal underpinnings of large-scale genomic biobanks. Annual Review of Genomics and Human Genetics, 8, 343–364.

    Article  Google Scholar 

  • Haga, S. B., & Beskow, L. M. (2008). Ethical, legal, and social implications of biobanks for genetic research. Advances in Genetics, 60, 505–544.

    Article  Google Scholar 

  • Hainaut, P., Caboux, E., Bevilacqua, G., Bosman, F., Dassesse, T., Hoefler, H., Janin, A., Langer, R., Larsimont, D., Morente, M., Riegman, P., Schirmacher, P., Stanta, G., & Zatloukal, K. (2009, September). Pathology as the cornerstone of human tissue banking: European consensus expert group report. Biopreserve and Biobank, 7(3), 157–160.

    Article  Google Scholar 

  • Hansson, M. G. (2005). Building on relationships of trust in biobank research. Journal of Medical Ethics, 31, 415–418.

    Article  Google Scholar 

  • Hansson, M. G., Dillner, J., Bartram, C. R., Carlsson, J., & Helgesson, G. (2006). Should donors be allowed to give broad consent to future biobank research? The Lancet Oncology, 7, 266–269.

    Article  Google Scholar 

  • Harrell, H. L., & Rothstein, M. A. (2016). Biobanking research and privacy Laws in the United States. The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics, 44(1), 106–127.

    Article  Google Scholar 

  • Harris, J. R., Burton, P., Knoppers, B. M., Lindpaintner, K., Bledsoe, M., Brookes, A. J., Budin-Ljøsne, I., Chisholm, R., Cox, D., Deschênes, M., Fortier, I., Hainaut, P., Hewitt, R., Kaye, J., Litton, J. E., Metspalu, A., Ollier, B., Palmer, L. J., Palotie, A., Pasterk, M., et al. (2012). Toward a roadmap in global biobanking for health. European Journal of Human Genetics: EJHG, 20(11), 1105–1111.

    Article  Google Scholar 

  • Helgesson, G. (2012). In Defense of broad consent. Cambridge Quarterly of Healthcare Ethics, 21(1), 40–50.

    Article  Google Scholar 

  • Hewitt, R., & Watson, P. (2013). Defining biobank. Biopreservation and Biobanking, 11(5), 309–315.

    Article  Google Scholar 

  • Husedzinovic, A., Ose, D., Schickhardt, C., Fröhling, S., & Winkler, E. C. (2015). Stakeholders’ perspectives on biobank-based genomic research: Systematic review of the literature. European Journal of Human Genetics: EJHG, 23(12), 1607–1614.

    Article  Google Scholar 

  • Johnston, C., & Kaye, J. (2014). Does the UK Biobank have a legal obligation to feedback individual findings to participants? Medical Law Review, 12(3), 239–267.

    Article  Google Scholar 

  • Karimi-Busheri, F., & Rasouli-Nia, A. (2015). Integration, networking, and global biobanking in the age of new biology. Advances in Experimental Medicine and Biology, 864, 1–9.

    Article  Google Scholar 

  • Kaye, J., Whitley, E., Lund, D., Morrison, M., Teare, H., & Melham, K. (2015). Dynamic consent: A patient interface for twenty-first century research networks. European Journal of Human Genetics, 23, 141–146.

    Article  Google Scholar 

  • Kaye, J., Bell, J., Briceno, L., & Mitchell, C. (2016). Biobank report: United Kingdom. The Journal of law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics, 44(1), 96–105.

    Article  Google Scholar 

  • Kinkorová, J. (2021). Education for future biobankers – The state-of-the-art and outlook. The EPMA Journal, 12(1), 15–25.

    Article  Google Scholar 

  • Knoppers, B. M. (2005). Biobanking: International norms. The Journal of Law, Medicine & Ethics, 33(1), 7–14.

    Article  Google Scholar 

  • Knoppers, B. M., Abdul-Rahman, M. H., & Bédard, K. (2007). Genomic databases and international collaboration. Kings Law Journal, 18, 291–311.

    Google Scholar 

  • Lehmann, S., Guadagni, F., Moore, H., Ashton, G., Barnes, M., Benson, E., Clements, J., Koppandi, I., Coppola, D., Demiroglu, S. Y., DeSouza, Y., de Wilde, A., Duker, J., Eliason, J., Glazer, B., Harding, K., Jeon, J. P., Kessler, J., Kokkat, T., Nanni, U., et al. (2012). Standard preanalytical coding for biospecimens: Review and implementation of the sample PREanalytical code (SPREC). Biopreservation and Biobanking, 10(4), 366–374.

    Article  Google Scholar 

  • Lipworth, W., Forsyth, R., & Kerridge, I. (2011). Tissue donation to biobanks: A review of sociological studies. Sociology of Health & Illness, 33, 792–811.

    Article  Google Scholar 

  • Luna Puerta, L., Kendall, W., Davies, B., Day, S., & Ward, H. (2020). The reported impact of public involvement in biobanks: A scoping review. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 23(4), 759–788.

    Article  Google Scholar 

  • Malsagova, K., Kopylov, A., Stepanov, A., Butkova, T., Sinitsyna, A., Izotov, A., & Kaysheva, A. (2020, July 16). Biobanks-a platform for scientific and biomedical research. Diagnostics (Basel), 10(7), 485.

    Article  Google Scholar 

  • Melham, K., Moraia, L. B., Mitchell, C., Morrison, M., Teare, H., & Kaye, J. (2014). The evolution of withdrawal: Negotiating research relationships in biobanking. Life sciences, society and policy, 10, 16.

    Article  Google Scholar 

  • Mendy, M., Caboux, E., Lawlor, R. T., Wright, J., & Wild, C. P. (2017). Common minimum technical standards and protocols for biobanks dedicated to cancer research. International Agency for Research on Cancer. IARC Technical Publications No. 44.

    Google Scholar 

  • Mitchell, D., Geissler, J., Parry-Jones, A., Keulen, H., Schmitt, D. C., Vavassori, R., & Matharoo-Ball, B. (2015). Biobanking from the patient perspective. Research Involvement and Engagement, 1, 4.

    Article  Google Scholar 

  • Moore, H. M., Kelly, A., McShane, L. M., & Vaught, J. (2012). Biospecimen reporting for improved study quality (BRISQ). Clinical Chemistry Record; International Journal of Clinical Chemistry, 413(15-16), 1305.

    Article  Google Scholar 

  • Nicholas, P. (2022). Lesson 25. Research with biological samples and biobanks. In Biolaw manual: (Adapted to teaching sciences, health sciences and social and legal sciences), Romeo CM (dir.), pp. 651–674. Editorial Dykinson: .

    Google Scholar 

  • Nicol, D., Critchley, C., McWhirter, R., & Whitton, T. (2016). Understanding public reactions to commercialization of biobanks and use of biobank resources. Social Science & Medicine, 1982(162), 79–87.

    Article  Google Scholar 

  • OECD Organization for Economic Cooperation and Development. (2010). OECD guidelines on human biobanks and genetic research databases. European Journal of Health Law, 17(2), 191–204.

    Google Scholar 

  • Quinlan, P. R., Groves, M., Jordan, L. B., Stobart, H., Purdie, C. A., & Thompson, A. M. (2015). The informatics challenges facing biobanks: A perspective from a United Kingdom biobanking network. Biopreservation and Biobanking, 13(5), 363–370.

    Article  Google Scholar 

  • Rothstein, M. A., Knoppers, B. M., & Harrell, H. L. (2016). Comparative approaches to biobanks and privacy. The Journal of Law, Medicine & Ethics, 44(1), 161–172.

    Article  Google Scholar 

  • Różyńska, J. (2021). Taking the principle of the primacy of the human being seriously. Medicine, Health Care, and Philosophy, 24(4), 547–562. https://doi.org/10.1007/s11019-021-10043-2

    Article  Google Scholar 

  • Shickle, D., Griffin, M., & El-Arifi, K. (2010). Inter- and intra-biobank networks: Classification of biobanks. Pathobiology: Journal of Immunopathology, Molecular and Cellular Biology, 77(4), 181–190.

    Article  Google Scholar 

  • Solbakk, J. H., et al. (2004). Mapping the language of research-biobanks and health registries: From traditional biobanking to research biobanking. In G. Árnason et al. (Eds.), Blood and data: Ethical, legal and social aspects of human genetic databases (pp. 299–305). University of Iceland Press and Center for Ethics.

    Google Scholar 

  • Somiari, S. B., & Somiari, R. I. (2015). The future of biobanking: A conceptual look at how biobanks can respond to the growing human biospecimen needs of researchers. Advances in Experimental Medicine and Biology, 864, 11–27.

    Article  Google Scholar 

  • Soulier, A. (2019). Reconsidering dynamic consent in biobanking: Ethical and political consequences of transforming research participants into ICT users. IEEE Technology and Society Magazine, 38(2), 62–70.

    Article  Google Scholar 

  • Steinsbekk, K. S., Kåre Myskja, B., & Solberg, B. (2013). Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem? European journal of human genetics, EJHG, 21(9), 897–902.

    Article  Google Scholar 

  • Thorogood, A., & Zawati, M. H. (2015). International guidelines for privacy in genomic biobanking (or the unexpected virtue of pluralism). The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics, 43(4), 690–702.

    Article  Google Scholar 

  • Vähäkangas, K., De, S., & Hainaut, P. (2021). Ethical challenges for biobanks: Two sides of the coin. In Biobanking of human biospecimens (pp. 107–134). Springer.

    Google Scholar 

  • van Draanen, J., Davidson, P., Bour-Jordan, H., Bowman-Carpio, L., Boyle, D., Dubinett, S., Gardner, B., Gardner, J., McFall, C., Mercola, D., Nakazono, T., Soares, S., Stoppler, H., Tempero, M., Vandenberg, S., Wan, Y. J., & Dry, S. (2017). Assessing researcher needs for a virtual biobank. Biopreservation and Biobanking, 15(3), 203–210.

    Article  Google Scholar 

  • Vaught, J., Kelly, A., & Hewitt, R. (2009). A review of international biobanks and networks: Success factors and key benchmarks. Biopreservation and Biobanking, 7(3), 143–150.

    Article  Google Scholar 

  • Watson, P. H., & Barnes, R. O. (2011). A proposed schema for classifying human research biobanks. Biopreservation and Biobanking, 9(4), 327–333.

    Article  Google Scholar 

  • Watson, P. H., Nussbeck, S. Y., Carter, C., O’Donoghue, S., Cheah, S., Matzke, L. A., Barnes, R. O., Bartlett, J., Carpenter, J., Grizzle, W. E., Johnston, R. N., Mes-Masson, A. M., Murphy, L., Sexton, K., Shepherd, L., Simeon-Dubach, D., Zeps, N., & Schacter, B. (2014). A framework for biobank sustainability. Biopreservation and Biobanking, 12(1), 60–68.

    Article  Google Scholar 

  • Wilkinson, M. D., Dumontier, M., Aalbersberg, I. J., Appleton, G., Axton, M., Baak, A., Blomberg, N., Boiten, J. W., da Silva Santos, L. B., Bourne, P. E., Bouwman, J., Brookes, A. J., Clark, T., Crosas, M., Dillo, I., Dumon, O., Edmunds, S., Evelo, C. T., Finkers, R., Gonzalez-Beltran, A., et al. (2016). The FAIR guiding principles for scientific data management and stewardship. Scientific Data, 3, 160018.

    Article  Google Scholar 

  • Wolf, S. M., Crock, B. N., Van Ness, B., Lawrenz, F., Kahn, J. P., Beskow, L. M., Cho, M. K., Christman, M. F., Green, R. C., Hall, R., Illes, J., Keane, M., Knoppers, B. M., Koenig, B. A., Kohane, I. S., Leroy, B., Maschke, K. J., McGeveran, W., Ossorio, P., Parker, L. S., et al. (2012). Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 14(4), 361–384.

    Article  Google Scholar 

  • Zawati, M. H., & Knoppers, B. M. (2012). International normative perspectives on the return of individual research results and incidental findings in genomic biobanks. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 14(4), 484–489.

    Article  Google Scholar 

  • Zawati, M. H., Knoppers, B., & Thorogood, A. (2014). Population biobanking and international collaboration. Pathobiology: Journal of Immunopathology, Molecular and Cellular Biology, 81(5–6), 276–285.

    Article  Google Scholar 

  • Zika, E., et al. (2010). Biobanks in Europe: Prospects for harmonization and networking. Publications Office of the European Union.

    Google Scholar 

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This chapter was funded by ANID Anillo ACT210079.

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Lecaros, J.A. (2023). Biobanks for Biomedical Research: Evolution and Future. In: Valdés, E., Lecaros, J.A. (eds) Handbook of Bioethical Decisions. Volume I. Collaborative Bioethics, vol 2. Springer, Cham. https://doi.org/10.1007/978-3-031-29451-8_17

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